Edinburgh ME Self Help Group

M.E. Support, Advice and Understanding

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Living with M.E./CFS

Diagnosis and referral

GP

Currently, there is no accepted diagnostic test for M.E./CFS, but there is ongoing research towards one. Diagnosis is based on a detailed medical history and tests to eliminate other conditions.

Your GP may be able to give you a definite diagnosis, especially if s/he has an interest in and experience of M.E./CFS. There will be information for your GP on the NHS Lothian intranet and various guidelines have been published.

Western General Hospital

You can ask for a referral to the Regional Infectious Diseases Unit (RIDU) at the Western General Hospital. The main consultant there is Dr David Wilks. There are three other consultants who also see people with M.E./CFS: Dr Janet Andrews, Dr Mike Jones, and Dr Clifford Leen. You will be asked to complete a questionnaire beforehand and your GP will be asked to complete a series of tests. Waiting times for clinics are around five months.

The RIDU clinic is able to offer a diagnosis or confirm a diagnosis, and may be able to suggest treatments for symptoms such as pain and sleep problems. They can refer you to the Lifestyle Management courses at the Thistle Foundation.

Children and Young People

Children and young people will usually be referred to the Royal Hospital for Sick Children by their GP.

Pain Clinics

If pain is a particular problem, you can ask for a referral to the Pain Clinic, also at the Western General Hospital. There are pain management courses held at the Astley Ainslie Hospital, and the Pain Association organises its own courses.

Self Management and Looking after Yourself

As with many conditions you will need to learn to manage your M.E. or CFS in the best way possible for you. This will involve learning and practising approaches like pacing to make best use of your energy. It is a good idea to keep a diary of symptoms and activities to help you see any patterns and pace what you are doing day by day. It is important not to attempt to ignore or “work through” symptoms, especially when you are first ill or are having a symptom flare-up or relapse. Remember to get plenty of fresh air, as much sunshine as you can manage, and adequate good quality rest for the stage of illness you are at. Relaxation and meditation approaches can be very helpful in getting proper rest.

Keep a good diet going with plenty of fish, vegetables and fruits: four or five small meals a day are better than one or two large meals. Drink plenty of water, and avoid or cut down on caffeine and alcohol. If you smoke, M.E. is another reason to stop.

There is a lot of information in the form of booklets and leaflets available from the national organisations, especially Action for M.E. and the ME Association; and you can get a lot of support and local information from other edmesh members. The Scottish Good Practice Statement on ME-CFS has a useful accompanying Patient Guide.

Self Management courses

Thistle Foundation

The Thistle Foundation runs regular self management/lifestyle management courses. Some of these courses are generic (for people with any condition), and some have been run specifically for people with ME-CFS. They are 10 week courses for small groups run by health specialists and people who themselves have ME-CFS or other conditions. You can refer yourself, or go through your GP or hospital specialist. There is also an ongoing weekly M.E. Continuation Group at the Thistle, which practises relaxation, meditation, and gentle stretches.

Arthritis Care

Arthritis Care lifestyle management courses are 6 week courses for people with any condition run at various locations round Scotland. Call 0808 800 4050 for more details.

Pain Association Scotland

Pain Association Scotland also runs specific pain management courses for any condition.

Other Sources of Help

For more advice on self management have a look at our Useful Links section.

Changing your GP

You can change your GP at any time without having to give a reason; you don’t need their consent. There is often more than one Doctor in a practice and you can ask to see any of the GPs in the practice where you are registered. Your local health board can also provide details of other GPs in your area.

When you have found another GP willing to accept you, you should take your medical card to the new GP to be registered. If you have lost your medical card the surgery will have a form which is sent instead. You can then make an appointment to see the new GP immediately.

You have the right to change your doctor if he or she isn’t supportive. But don’t search for the impossible; doctors don’t have a cure for M.E. If you do decide you want to change your GP, talk to people in your local area M.E. group to see if they know of anyone in their area.

Make your holiday a pleasure instead of a pain

Travelling is supposed to be a pleasurable activity. However, the reality of travelling with M.E. is that often just getting to the destination can be stressful and exhausting. Here are some handy hints to reduce the stresses and fatigue factors to a minimum:

Itinerary

  • Evaluate where you are going and what you will be doing.
  • Do not set unrealistic expectations for yourself.
  • Choose a destination that you will be physically comfortable with.
  • Be realistic about how much activity you can handle each day. It is natural to want to see and do all you can, but if you try to do too much, you will not enjoy any of it.
  • Schedule rest periods into your itinerary that allow you to take a nap.
  • If it is not possible to return to your hotel at regular intervals, at least allow yourself time to sit down in a cafe and have a cup of tea while your body rests and revives.
  • Make your first day a short one. Avoid any sightseeing the day you arrive. Travelling is tiring at best, so just plan to settle in, rest and maybe go out for a nice dinner.
  • If possible, plan at least one day of rest after you return home before going back to work or resuming other activities.

Accommodation

  • When booking accommodation make sure you ask specific questions about where you’ll be staying. Ask for a room that is on the main floor or near the elevator to minimise the distance you have to drag yourself and your luggage.
  • Be sure to specify the accommodations you need (e.g. wheelchair accessible, shower grab bars, smoking/non-smoking).

Airlines

  • If you are travelling by air, call the airline and tell them what problems you may have with boarding.
  • If possible, request a bulkhead aisle seat. This is the easiest seat to get in and out of and has the most leg room.
  • Allow yourself extra time when changing planes so that, even if the flight is running late, you will be able to make your connecting flight without rushing.
  • Ask the airline what arrangements you need to make to minimise walking in the airports. Even if you do not normally use a wheelchair, you can request that one be made available. Save your energy for sightseeing and other fun holiday activities.
  • Get your ticket and boarding pass ahead of time to minimise the number of times you have to queue.
  • Use luggage with wheels, check-in most of your bags and only carry on what you absolutely have to have during your flight.
  • Be sure to keep any medications in their original prescription bottles with you. In the event that your luggage is lost, you will still have the medicine you need.

Car Journeys

  • If you are travelling by car, plan to stop for a few minutes every hour or two. Get out of the car, stretch and walk around a little. Staying in any one position too long will cause you to become stiff, increasing your pain.
  • If there is room in the car, make a bed in the backseat so you can lie down when necessary. Try out a variety of sitting positions and note how many pillows you will need to take to keep you as comfortable as possible.

Travelling Companions

When you are planning your trip, sit down with your travel companion and make sure they understand ahead of time that you may not be able to do everything they want to do. The most stressful part of a trip can be trying to meet someone else’s expectations. Before you leave home, come to an agreement on how to handle the times you need to rest. Do you mind if they go somewhere without you one day? Are they willing to let you rest without making you feel guilty? Discuss possible scenarios and how you will handle them. Knowing you are free to say, “I’m really tired. I think I’ll skip Water World this afternoon.” enables you to relax and enjoy yourself.